Teen Eating Issues/Disorders Support Thread 2

[myrtleWilson]

Our first thread is almost full. Here is our second - a place to seek and share advice, to lament and scream with rage and sadness, to celebrate each other's successes as we navigate the choppy waters of supporting our children with eating disorders.

All are very welcome, whether you're at the start of this journey or a more seasoned traveller.

I'll link this thread to the first one and then I thought it may be helpful if on joining this one we did a quick precis of our current situation.

www.mumsnet.com/Talk/eating_disorders/4016379-teen-eating-issues-support-thread?msgid=104736115

Thanks for all the support everyone, I know from experience over the past year that ED is a tricksy, evil illness that always feels one step ahead of you. But as I've said on this thread many a time, we should celebrate any small win because a) it gives us hope and encouragement to keep going through the darkest moments and b) hopefully it lodges somewhere in our DC's brains that there is an alternative to life with an ED. So whilst under no illusion about today's developments, it definitely is worth some internal cheering as it meets both a) and b).

lougle it really is bad form of CAMHS to say you'll get appointments and then they appear to twist it to say you're on the waiting list for appointments.

sotired - Hope face to face meeting goes well - it is ED awareness week and there is lots of stats online, on social media and various MP's signing up to improve services - if you are on twitter then perhaps have a look around for stats or comments of support from your local MP or the CCG etc and use that in your chat with GP.

Lotts - it is so hard constantly policing activity and feeling like the jailer... Whilst as parents we're always putting in place boundaries, this feels like a different shift in relationship and not always a positive one.

Girlie - one of the pieces of advice that IHT have given DD is for every 'bad' thought to write out a positive counterpoint. And to do it in red and green ink. So, if DD thinks/writes - I'm eating too much and am greedy - the counterpoint is "this is the right amount of food to keep me well'. I think the idea is that them writing it themselves rather than hearing someone else say it, is a bit of a 'fake it till you make it' approach - is your CBT encouraging a similar method?

They thanks I had seen they show advertised on Netflix will def avoid!! I was grateful for the heads up on the final season of The Crown as well as there's a fair amount of Princess Di throwing up.

It is a bit if minefield, I wish Netflix were clearer in their blurbs about what the shows are about. I find their age ratings very hit and miss as well.

Sorry myrtle I forgot to reply, I'm not sure as dd doesn't really talk much about what she's meant to do but her 'homework' this week was to write down her feeling and the corresponding thought. I imagine it is to try and get dd to recognise how unhelpful thoughts ie I'm so fat, I've eaten too much and the feeling I want to die are linked and if she challenged the thought she might not get the feeling?

Pretty hard for a young 15yo to get her head round though, most adults struggle with the odd negative thought processes and feeling crap.

Just a warning, @TheySeeHerRowling, on Netflix there's a film 'To the Bone' which is about a girl with Anorexia who goes to an inpatient unit. It's pretty harrowing.

Yes I watched ‘to the bone’ as well def do not allow them to watch it. It takes a near death experience to ‘wake her up’ not sure I liked the message tbh.

Met with school. They want to be helpful. But need to go away to see if they can make ‘supervising’ break time ( ie making sure she eats and stopping her moving) work... they have agreed to home for lunch and all the usual stuff about checking in with her.
They have flatly reduced two allow her to log on remotely to lessons so if she cannot manage going in that will be school for the moment. So I need to try to make it work. I am a little disappointed tbh. They will allow remote log in for COVID isolation reasons but nothing else.
Meeting head of girls sport in a bit to bite that bullet.
I think I am going to just have to take the plunge and let her go baclk and hope she can manage break time and eat her snack. If not I will have to load the cals later on but there is so little time between the end of the school day and bed to fit more food in...
Tbh could do with another 3 weeks of school closure to give us 6 more weeks to work on independent snack eating.,,.

We’ve had a good weigh in today, which has solidified my decision to allow DD to go back to school next week. I have a mtg with her Psych and KW tomorrow and I’ll see what they say, but as she is now within 1KG of her 80% WFH I can’t see them changing my mind.

The KW told DD last week that if I let her go to school (when DD said “if it isn’t the law then you can’t stop me” to her) she could call child services as they would consider it neglect 😲. If she tries that with me tomorrow I may give her both barrels. I was decidedly unimpressed when DD told me.

DD knows she has to keep the weight gain going and to be fair to her, she really is trying, no matter how hard she finds it. The only thing so far that she just can’t bring herself to eat is a proper pudding - ie cake and custard. She actually started retching, when she tried, such is the fear, so I let that one go. Otherwise she’s doing well.

We've got weigh-in and therapy session tomorrow followed by Zoom with head of year and head of pastoral from school on Thursday. Thanks @Lottsbiffandsmudge for your experience as it's useful for me to think of questions. Bit annoying that she can't do school remotely given that the tech is now there for CV isolators. I can't take her out every lunch, realistically, as the school is too far away. At the moment, I think we're just going to hope and keep an eye on her weight. She won't even tell her friends what's going on so that makes it challenging.

The things I'm going to bring up in the meeting are:
a) no science/wellness lessons about healthy eating etc
b) no PE for the moment
c) suggestions for overseeing morning snack?
d) ditto lunchtimes
e) letting them know I'm driving her to school (they're v v anti driving to school, for completely valid reasons, so I don't want to be the pariah).

If anyone thinks of anything else, please share.

And good luck to all of those returning on Monday.

@Lottsbiffandsmudge that sounds like a positive meeting. Surprising that they won't allow remote log in for medical reasons. DD1's school issued a hard line 'Covid only' email about remote learning, but immediately offered it when I said she's not allowed back. Who was it who said no? Is there a possibility that the head teacher may override?

@exLtEveDallas glad your weigh in went well. I think they're right about being able to call child services, tbh, but that doesn't necessarily mean that child services would agree that it's neglect. You're trying to balance competing influences on her mental health and there is no perfect solution. 80% is still quite a way off the 85% they recommend, but if you truly think it will do her more harm to stay off, then you have to argue that point.

For me, DD1 is in no way fit for school and she's been telling us she's struggling for a very long time. She's 70% now and even if she manages 500g/week with no set backs, she won't hit 8kg weight gain until mid July. So in my mind, year 10 is finished for her. Whether she'll be fit to do some remote learning in a few weeks, we'll see. The dietician suggested they might let her back to school in a wheelchair at 81/82% WFH, so that would probably be after May half-term.

Agree it's a nightmare, triggering themes everyehere you look. Prob not so bad for us yet as DD only 13 ... 15's sound like a minefield.

Still not heard back from our school re those shocking French slides ( the vid was even better..). Am so angry. Luckily it was DDs sister in same yr that saw them, but it's no wondet CAMHS is overrun if we're peddling this kind of stuff in schools.
@SoTiredNeedHoliday really hope gp appt was more productive face to face. It shouldn't matter that dd's weight is stable- if she's getting slightly taller her wfh is dropping and that's a concern. They can't ignore you.
@Lottsbiffandsmudge
Agree it's a nightmare trying to watch stuff without bricking it every time
@SoTiredNeedHoliday really hope gp appt was more productive face to face. Surely it shouldn't matter that dd's weight is stable - if she's getting any taller her wfh is dropping & that's got to be a concern.
@Lottsbif its so hard when you feel you've done all the same stuff but don't get a gain. We often had weeks like that and it is incredibly soul destroying. I guess some weeks their bodies are just using the cals up for brain restoration, hormones etc, non weight gaining jobs...? Fingers crossed youre on the up again nxt Tues.

Lots I watched that film before dd was ill, when dd was at school and even then thought the message was shit!! I don't think I've ever seen anorexia realistically portrayed on the telly thinking about it...

Interesting re all the chat about school, I need to message dds year head to clarify the plan. Dd is slowly and painfully accepting snacks, this afternoons snack was particularly stressful as she held it in her mouth for ages. The deal was she had to be eating snacks to be able to go back to school.

When I last spoke to the year head we agreed on supervision for morning snack and lunch somewhere quiet with one friend, no crap healthy eating lessons and no P.E.

My main concern is dd loosing weight that has been such a massive mission to put on 😕

Pack lunches will be harder to hide loads of calories in like the lunches I'm currently giving her at home. She would absolutely hate coming home for lunch plus I do need to go back to work at some point!!

On the 8th dd has the dentist anyway for a possible extraction so will miss the first day or two.

@Lotts sorry, just caught up on messages - don't understand thinking behind not allowing your daughter to access online learning. Seems bonkers?? Agree you shld press them on that one if you feel it wld be good for DD to be occupied with something else versus ED thoughts. Our DD missed tons of yr7 ( unavoidable when in hosp plus no remote learning set up!) and now, into yr 8, which is going to make it much harder to get her started there again in a few weeks' time.

It must be different percentages for different areas Lougle because ours said it was 80% WFH, not 85. DD is still visibly thin, but has put on 7KG since her hospitalisation at Xmas, and right up until that happened she was at school, and even doing PE! She needs another 10 KG to be ‘perfect’ but I’d settle for 5 I think.

I’m going to say no PE, but I’m satisfied that she will eat a snack and her lunch. She also knows that if she loses any weight I’ll pull her back out quick smart. She wants to be able to return to netball as soon as poss and I won’t let her do that until she is closer to the 100%

TBH I’m not sure how I’d stop her going if she was determined. Other than physically, and I really don’t want to go down that route.

@exLtEveDallas if your area says 80% then I think your argument gets much stronger. Ultimately, you can always pull her out if she doesn't play ball.

@TheySeeHerRowling if you have Prime, there are a lot of things there, including a documentary filmed by a girl who was dying of AN. So one to be aware of.

She ate the mixed pasta, sausage, sweetcorn and had some cheese sprinkled on it. Not a huge change in calories but a step forward in challenging fear foods - she's even talking about having sauce on pasta... She gave herself the permission at the beginning of the meal saying "This is good for me, this is the meal my body needs".

Am so proud of her - even if we regress tomorrow, that meal is in the bank and the ED can't make her un-eat it....

That's amazing @myrtleWilson.

I've just scared myself silly by watching 'Emma wants to live' on Prime. What scared me the most is that she was the same weight as DD1 when she first went into hospital, then relapsed at 40kg.

@Girliefriendlikespuppies

My heart goes out to you - our girls are beautiful and perfect just as they were before all of this - we want them back and we want them to see the girl we see 😔

Have you guys watched ‘Life’s too short to weigh your cornflakes” ?

It’s on YouTube it’s a talk an ex anorexic gave on her story - I didn’t let dad watch it all but the last 4 minutes where she talks about recovery / this girl is quite something xx worth a watch xx

@myrtleWilson that is such good news 😃

Sorry another post - we haven’t been given a target weight I was wondering what your targets were for your girls ?

Dd keeps asking how long will she have to keep eating “this much”?

We’ve talked about fear foods - she doesn’t want to start until she’s reached the goal weight - whatever that is - so that if a fear food ruins a meal it won’t affect the weight progress she has made

@Jojo2347 we've haven't been given a target as such, but her letter said 54kg.

@myrtleWilson woo hoo!! Go your DD. Hope that gives you a deserved boost..even if tomorrow is less good, she's shown she can really challenge her E.D which is so positive. Maybe if you can keep reminding her that she did it and coped, she can keep building on that.
@Jojo2347 wow, yes, just watched it. What an amazing young woman. So courageous sharing it like that. Gives me hope for DD.

@Jojo2347 and on the target question...think it depends alot on your DDs "normal" range before the onset of ED. They shld look at growth charts, red books, prev school weigh in programmes to estsnlish an appropriate target for your DD. Ours has always sat at the lower end of "healthy" ie the 95% mark so whatever that ewuates to in her current weigh for height.

I am reading all your comments with tears in my eyes. As someone who has recovered from AN I just want to say my heart goes out to each and every one of you. It is such an evil disease and it is all consuming. I have been through the worst of it and come out strong, able to look at food with love and have learnt to love my body. It has taken me a long time to get to where I am today. I promise, there is light at the end of what may seem like a tunnel which feels like it never ends.